‘A living death’: a qualitative assessment of quality of life among women with trichiasis in rural Niger Stephanie L. Palmera,b,*, Kate Winskellb, Amy E. Pattersona,c, Kadri Boubacard, Fatahou Ibrahime, Ibrahim Namatae, Tahirou Oungoilaf, Mohamed Salissou Kane´g, Adamou Sabo Hassanf, Aryc W. Moshera,h, Donald R. Hopkinsa and Paul M. Emersona,i The Carter Center, Atlanta, Georgia, USA; bRollins School of Public Health, Emory University, Atlanta, Georgia, USA; cAgnes Scott College, Decatur, Georgia, USA; dProgramme Nationale de la Sante´ Oculaire, Niamey, Niger; eEcole Nationale de la Sante´ Publique, Zinder, Niger; f The Carter Center Niger, Zinder, Niger; gThe Carter Center Niger, Niamey, Niger; hBill & Melinda Gates Foundation, Seattle, Washington, USA; i The International Trachoma Initiative, Decatur, Georgia, USA *Corresponding author: Present address: 453 Freedom Parkway, Atlanta, GA 30307, USA. Tel: +1 404 420 3842; E-mail: [email protected]
Received 22 April 2014; revised 25 May 2014; accepted 9 June 2014 Background: Prior to blindness, trachoma is thought to profoundly affect women’s abilities to lead normal lives, but supporting evidence is lacking. To better understand the effects of trichiasis, we asked women to define quality of life, how trichiasis affects this idea and their perceptions of eyelid surgery. Methods: Operated and unoperated women were purposively selected for in-depth interviews. These were audio-recorded and transcribed, and codes were identified and applied to the transcripts. Overarching themes, commonalities and differences were identified and matched to quotations. Results: Twenty-three women were interviewed. Quality of life was defined as health, security, family, social status and religious participation. Trichiasis caused severe pain and loss of health, leading to loss of security. This affected social, economic and religious activities and caused burden on their families. Surgery improved quality of life, even in cases of surgical failure or recurrent disease. Conclusions: Trichiasis disables most women, even those reporting fewer or less-severe symptoms. While women in rural Niger often live in extreme poverty, trichiasis exacerbates the situation, making women unable to work and undermining their social status. It adds to family burden, as women lose the ability to meaningfully contribute to the household and require additional family resources for their care. Keywords: Niger, Quality of life, Trichiasis, Women
Introduction Endemic to 53 countries, trachoma is the leading cause of infectious blindness worldwide. An estimated 325 million people are at risk for the disease, and 7.2 million have the blinding form of the disease, known as trachomatous trichiasis.1 Repeated ocular infections with the bacterium Chlamydia trachomatis lead to scarring of the conjunctiva of the inner surface of the eyelid, causing the eyelashes to turn towards the eye and abrade the cornea. The abrasion leads to corneal damage, vision loss and, eventually, irreversible blindness.2,3 Trichiasis is thought to have widespread consequences on individuals, families and communities, even prior to vision loss; however, the evidence supporting this statement is scant and
largely anecdotal. The little available evidence suggests that at the individual level, trichiasis causes negative physical and psychological effects such as pain, physical disability and stigmatisation, particularly for women.4–7 Despite these far-reaching effects, much of the published literature on trachoma has focused on its prevalence and risk factors, as well as programmatic evaluations of the SAFE strategy (S for surgery to correct entropion; A for mass antibiotic treatment for active infections; F for facial cleanliness and hygiene; and E for environmental improvements). Of the three published studies available examining any indicators of quality of life, two focused on physical functioning6,7 and the other additionally looked at mental health and impact on social and environmental indicators.5 All studies showed decreases in physical functioning, and
# The Author 2014. Published by Oxford University Press on behalf of Royal Society of Tropical Medicine and Hygiene. All rights reserved. For permissions, please e-mail: [email protected].
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ORIGINAL ARTICLE
Int Health 2014; 6: 291–297 doi:10.1093/inthealth/ihu054 Advance Access publication 14 August 2014
S. L. Palmer et al.
Methods Study population and setting This study was conducted in six villages in four districts of the Zinder and Maradi regions of eastern Niger, comprising four villages in two districts in Zinder (Zinder Commune and Magaria) and two villages in two districts in Maradi (Tessaoua and Aguie´). Zinder and Maradi are the most trachoma-endemic areas of Niger and harbour the highest numbers of trichiasis patients in the country. The majority of the population are ethnic Hausa, with Touareg, Kanouri and Peulh in the minority, and the large majority of the population is Muslim.
Village selection A list of all villages from which at least one trichiasis patient was operated in 2011 in the Zinder and Maradi regions was compiled and listed by district and region in Microsoft Excel (Microsoft Corp., Redmond, WA, USA) and then randomised using the RANDOM function. Villages were visited in the order on the list. If a village was found to be unsuitable due to inaccessibility or insecurity, the next village in the same district was visited. Villages were visited until data saturation had been achieved. As data were collected, an initial analysis was being conducted concurrently, enabling the researchers to determine the point of data saturation (defined as the point at which no new themes emerged from the interviews).
Participant recruitment and sample size Community health workers asked all women (aged ≥18 years) living with trichiasis or who had received eyelid surgery to report to a central location, generally the residence of the village chief. After obtaining informed consent, a trained trichiasis surgeon examined each potential participant to detect trichiasis and
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corneal opacity and, if they were present, to determine their severity. The trichiasis surgeon then completed a form with demographic and clinical characteristics. Women with an ocular co-morbidity, such as cataract, were excluded from further participation but were referred to care at the nearest hospital. Eligible women participated in a total of six unrecorded focus group discussions that focused on trachoma prevention and treatment. These did not segregate women based on operative status or other characteristics and were led by the female trichiasis surgeon and observed at a distance by the male interviewers to determine which women to invite to interview. Only women who actively participated in the focus groups and with select clinical and demographic characteristics (age, severity of trichiasis, operated versus unoperated) were asked to participate in in-depth interviews. A table listing the different combinations of these characteristics was used to track whether or not a woman with specific characteristics had been interviewed. The study team attempted to select at least one woman with each combination, and no more than two women with a given combination, to ensure variability in the sample. If the women accepted, they were asked to choose a female confidante (a close family member or friend knowledgeable about the other woman’s condition) aged ≥18 years to join them.13 Demographic information was collected on each confidante. Interviews were held in a private location of the participant’s choosing; women were interviewed by one of the two interviewers. It was estimated that 10–15 interviews each would be needed with operated and unoperated women with trichiasis in order to reach data saturation.14
Study instruments and interviewers Semi-structured interview guides were developed for in-depth interviews. Questions were categorised into three main themes: 1. definition of a quality life; 2. how trichiasis did or did not affect this ideal; and 3. perceived effects of surgery on quality of life. Interview guides were developed in French, discussed and modified by the study team and translated into Hausa, and then back-translated by an independent person to ensure quality translation. The interviews were recorded with digital audio recorders. Interviews were conducted by public health students at the Ecole Nationale de la Sante´ Publique (Zinder, Niger) who had previous experience in interviewing patients with neglected tropical diseases and who had been trained in qualitative research and interviewing.
Data analysis and verification Audio recordings were transcribed verbatim into French, de-identified and then uploaded into MAXQDA 2010 (VERBI Software, Berlin, Germany). From the interview guides, deductive codes were identified, defined and entered into the codebook. After reading and re-reading the data, inductive codes were identified, defined and entered into the codebook.15 Codes were applied to the transcripts. A PhD-level qualitative researcher not involved with the data collection applied the codes to a subset of the transcripts (six). Discrepancies in coding were discussed, code definitions were adjusted, and transcripts were re-coded. Analytic memos were written throughout the readings of the transcripts to identify overarching themes and commonalities as
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the third study also showed effects on trichiasis patients’ mental health and environment, but no effects on relationships/social life. However, these studies were conducted using quantitative quality-of-life instruments that were not designed specifically for those with trichiasis and may not have been validated in similar settings.8 In addition, they may not have captured the issues most important to this population.9 Niger is considered one of the priority countries for elimination of blindness due to trachoma owing to the large percentage of the population at risk for trachoma and a large backlog of persons in need of trichiasis surgery.10 The majority of this backlog are women since trichiasis presents more commonly in women than in men,11 a phenomenon generally attributed to women’s roles as caretakers of young children, the main reservoirs of the infection, and women’s subsequent increased exposure to infection.12 However, to our knowledge, no publications exist on the social implications of trichiasis on women in this setting. To this end, we aimed to determine how women in rural Niger themselves describe the effects of trichiasis on their quality of life. The study’s first objective was to determine how these women define ‘quality of life’ and whether trichiasis affects this ideal. The study also sought to assess the impact of surgery on the quality of life of those operated upon.
International Health
well as differences within and between interviews. Text segments relating to these themes were separated by strata (operated and non-operated women) and again examined for commonalities and differences within and between strata. The unit of analysis used for the in-depth interviews was the patient–friend pair; however, quotations from friends were distinguished from those made by patients, as their statements were generally contextual and not experiential.
Results A total of 45 operated and non-operated women were identified, of whom 3 were excluded due to an ocular co-morbidity. Thus, 42 women participated in focus groups, of whom 19 were subsequently excluded from participation in the in-depth interviews based on non-participation in the focus groups. A total of 23 women were selected for interview, 13 of whom had previously been operated for trichiasis and 10 who had never received surgery. Women representing a variety of ages, time since surgery and clinical presentations were interviewed (Table 1). The average duration for each interview was 45 min. We first describe women’s perceptions of what constitutes a quality life before illustrating how trichiasis affected this ideal and presenting these women’s perceptions of surgery.
Definition of a quality life A quality life was defined as having health, security, family, social status and fulfilment of religious obligations. All women stated that health was the most important indicator of a quality life, and nearly all of the other indicators of a quality life were linked to health and to each other. Security (food and financial) was viewed as both a pre-requisite for and consequence of health and could be obtained in two ways: providing for oneself through working or being provided for by family: ‘. . . the husband, too, needs to make money or find a way to make money. If not . . . there will be no ideal life. If he doesn’t have anything, neither do you’ (operated woman, 60 years, Magaria). However, the importance of having a husband extended beyond security; the personal relationship was also important: ‘A good life is when you get along well with your husband, if you are together for better or worse. If you play and laugh peacefully with your husband and community, that’s the good life for a person’ (operated woman, 50 years, Zinder Commune). Children were also identified as a source of security, but they were additionally viewed as a source of social standing, which constituted another element of a quality life: ‘If God gives you children, they will help you live, but if God didn’t give you children, you won’t be considered in the community . . . if you have children with money, even if you are handicapped, people will approach you and respect you’ (unoperated woman, 35 years, Zinder Commune). Besides having children, status in the community may be gained and manifested through active participation in economic activity: ‘A quality life is when . . . you are able to do your commerce in neighboring villages or you borrow money from someone to grow your business. When you do that, you have your dignity
Effects of trichiasis on quality of life Physical symptoms Trichiasis caused pain for all women: ‘I feel as if someone’s pricking my eyes with a thorn’ (unoperated woman, 27 years, Tessaoua); or ‘it was as if it [my eye] was set on fire’ (operated woman, 50 years, Tessaoua). Nearly all women also described experiencing watery or purulent eyes and problems with their vision, and some women also reported itching, headaches, swelling, fever, sores, photophobia, red eyes and insomnia. No women reported experiencing no symptoms; however, some women reported only a couple of minor symptoms, while others reported experiencing many or severe symptoms. The number of symptoms or severity of symptoms experienced did not always correspond to the level of clinical severity of the disease. Loss of security Participants described how the severe pain led to physical disability and subsequent loss of security. As previously defined, security was obtained through ability to work and through social relationships. Most women stated that due to the pain and photophobia from trichiasis, farming was difficult, if not impossible; to a lesser extent, they encountered difficulties in housework and taking care of their children and animals. This inability to work subsequently led to a loss of security in terms of food and money, and was compounded if social relationships were weak or absent: ‘If she farms, she’ll kill the millet. What difficulty is bigger than that?. . . In order to eat, she has to beg. She has no one who will bring her something to eat. This trichiasis, that’s the difficulty’ (friend of unoperated woman, 60 years, Aguie´). However, if social relationships were already weak or absent, trichiasis not only led to loss of security, it could also be the cause of decreased social status. One woman’s confidante stated: ‘. . . it’s in this search for medication that her entire fortune was spent. And now, she has nothing . . . and in this social life, they say if you have nothing, you are nothing’ (friend of operated women, 70 years, Zinder Commune). Stigmatisation The majority of patients had experienced social withdrawal and/ or social exclusion, a response to stigmatisation they anticipate from others: ‘. . . it [trichiasis] bothers me, especially the tears, and sometimes it prevents me from following my friends to
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Participation and study sample
and have money to spend in neighboring villages’ (operated woman, 38 years, Zinder Commune). Economic security and social status were also linked through fulfilment of social and religious obligations (one of the five pillars of Islam is zakat, the mandatory donation of a percentage of one’s wealth and income to the poor. Sadaka is a voluntary act of giving, and includes giving alms or gifts during weddings, baptisms or funerals). Muslims are required to give a certain portion of their earnings to those less fortunate and are also taught to give additional charity when inspired or able: ‘I never killed a sheep for Tabaski (a Muslim holiday), but I either killed or gave six live animals to family or neighbors who were needy’ (operated woman, 90 years, Tessaoua).
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294 Table 1. Demographic and clinical characteristics of operated and unoperated women (n¼23) Patient ID
District
Operated women 1 Zinder Commune 2 Zinder Commune 3 Zinder Commune 4 Zinder Commune 6 Magaria 8 Magaria 11 Zinder Commune 12 Zinder Commune 15 Magaria 19 Tessaoua 20 Tessaoua 21 Tessaoua 22 Aguie´ Unoperated women 5 Zinder Commune 7 Magaria 9 Magaria 10 Zinder Commune 13 Magaria 14 Magaria 16 Magaria 17 Tessaoua 18 Tessaoua 23 Aguie´
Region Age (years)
No. of times operated
Time since most recent surgery
Bilateral surgery
Severity of TT (worst eye)a
Currently epilating (either eye)
Presence of corneal opacity (either eye)
Evidence of post-operative TT (in either/both operated eye[s])
Zinder Zinder Zinder Zinder Zinder Zinder Zinder Zinder Zinder Maradi Maradi Maradi Maradi
70 60 50 80 45 60 38 30 70 90 20 50 40
1 1 2 2 1 1 2 1 2 1 2 1 1
6 months 6 months 3 months 3 years 5 months 5 months 2 years 6 years 6 months 25 years 3 months 3 months 10 years
No No Yes Yes No Yes Yes No Yes No Yes Yes No
None None Major Major None Major None None Mild Severe Severe None Major
No No No NR No Yes No No No No No No Yes
No No No NR No No No No No No No Yes No
No No Yes Yes No Yes No No Yes Yes Yes No Yes
Zinder Zinder Zinder Zinder Zinder Zinder Zinder Maradi Maradi Maradi
35 55 30 38 25 35 35 40 27 60
0 0 0 0 0 0 0 0 0 0
NA NA NA NA NA NA NA NA NA NA
NA NA NA NA NA NA NA NA NA NA
Major Mild Mild Major Mild Mild Mild Severe Severe Severe
Yes Yes No Yes No Yes Yes Yes Yes Yes
No Yes No No No No No Yes No No
NA NA NA NA NA NA NA NA NA NA
NA: not applicable; NR: data not recorded; TT: trachomatous trichiasis. Trichiasis is generally classified as minor (1–4 lashes or evidence of epilation) and major (≥5 lashes). However, for the purposes of this study, this was broken down as follows into four categories, as there may not be a meaningful difference in terms of quality of life in someone with 4 lashes and 5 lashes in the eye: none ¼ 0 lashes or evidence of epilation; mild ¼ 1–4 lashes; major ¼ 5–10 lashes; and severe ¼ .10 lashes.
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Family burden Trichiasis was also a burden on women’s families. In Niger, children often share in the household work. One woman, who had developed trichiasis early in life, was not able to help her mother. Her mother recalls: ‘I didn’t even make her work. I saw children go to the well, but me, I didn’t send her. When I saw her eyes, I told myself, “I won’t make her do any work”’ (friend of operated woman, 20 years, Tessaoua). Men in households with trichiasis patients were affected in two main ways. First, since women were often unable to perform household and farm work to support the well-being of their families, at times it was men who took over these duties. One woman said that it was her husband who did the cooking and laundry in the household. Second, men were affected financially, as they often spent large sums of money caring for wives and mothers with the disease.
Illness, including trichiasis, was viewed by those who had received the operation as a disruption to a quality life. Epilation was seen as part of the state of illness and was therefore not compatible with a quality life: ‘. . . whenever it [trichiasis] stings you, you feel pain all over your head. It affects your spirit, so one can’t speak of a life of quality with this pain you feel. Sometimes when it bothers you, you need to epilate in order to feel relief. When I had trichiasis, I always had my tool with me to epilate with. Before the trichiasis developed, at this time, you felt better and you could say that you had an ideal life’ (operated woman, 80 years, Zinder Commune).
Perceptions of trichiasis surgery and its impact on quality of life All but one operated patient stated that trichiasis surgery had improved their quality of life, and the one patient whose life had not been improved stated that she would still consider undergoing the surgery again to rid herself of the pain. For nearly all of the patients who had undergone surgery, the improvement in quality of life was expressed as an amelioration or complete disappearance of physical symptoms. Trichiasis surgery was viewed as a life-changing experience: not only was health regained after surgery, but life was as well. One woman stated, ‘All who received the surgery are healed. There are no more tears in the eyes or eyelashes that prick. They have recovered their best life’ (unoperated woman, 38 years, Zinder Commune).
Improved health, security and social integration Search for a cure Patients described living with trichiasis as a constant, often futile, search for a cure, which affected both themselves and their families. The mother of one operated woman, who had developed trichiasis at a young age, stated, ‘Everywhere where I heard there was someone with medication, I would go. Like that, I did everything. But nothing [helped]’ (friend of operated woman, 20 years, Tessaoua). It should be noted that this search for a cure was always in relation to pain relief and reduction of other physical symptoms; in only one instance did a woman tie this search for a cure to avoiding blindness. Although women commonly practiced non-surgical management strategies such as epilation, women described the relief they obtained from them as cyclical: they would experience the pain and other symptoms of trichiasis, epilate, and then the cycle would generally be repeated every couple of days: ‘Today I am epilated, tomorrow I am epilated’ (operated woman, 38 years, Zinder Commune). In general, operated patients viewed epilation as a way to provide immediate pain relief, while surgery was a long-term cure: ‘And then they were searching for an instrument to epilate me, and they heard there was this operation, and I said “I’m going to go do it”. . . This surgery is better . . . yes it’s superior to the other [epilation], but since they operated me, there have been no others [trichiatic lashes]’ (operated woman, 70 years, Zinder Commune).
Prior to surgery, nearly all operated patients expected to improve their health through trichiasis surgery, while a few also explicitly stated that they had hoped to regain their abilities to work, travel and re-integrate socially. One operated woman stated: ‘My expectations [of surgery] were to recover my health: see what I want with my eyes; look after my husband; be able to do my work, cooking, farming; travel and go where I want and be able to integrate into the community without difficulties . . . My expectations were satisfied and my vision has improved (operated woman, 30 years, Zinder Commune). While nearly all operated patients stated that their expectations were fulfilled through surgery, several women had to have more than one surgery before their trichiasis was corrected and their symptoms abated. All but one patient with recurrent disease (including major and severe trichiasis) stated that the surgery had been successful; the recurrence may have been less severe than their state prior to surgery. One woman with severe post-operative trichiasis (.10 lashes touching the eye) stated, ‘Since I had the operation, I never felt anything bad in my eyes’ (operated woman, 20 years, Tessaoua). Only one patient said that she had experienced no improvement from the surgery and was, in fact, in a worse state: ‘If I had known what was to come, I wouldn’t have gone. I would have been happy with my initial situation which didn’t stop me from working’ (operated woman, 50 years, Tessaoua). However, despite her poor outcome, this patient recognised that others had had successful outcomes.
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participate in a village activity . . . if you don’t have eyes, it’s like a living death’ (operated woman, 35 years, Magaria). In other cases, the exclusion was imposed by others: ‘It’s your group of friends who talk about you and put you down. [They say] “Look at this dirty woman. She spills her tears on everything she touches and cooks. Her hands and clothing are dirty”’ (operated woman, 60 years, Magaria). While only a few women spoke about their relationships with men, all who spoke about them stated that their own husbands had treated them respectfully, although they had heard that other men abandoned their wives with trichiasis or refused to eat dishes they had prepared. However, one young woman stated that a man had come to ask her father for her hand in marriage, but after hearing about her condition he never returned.
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Complications and disease recurrence
Discussion This study demonstrates the profound effects of trichiasis on the quality of life of these women, even for some presenting with clinically mild trichiasis. For many, the pain is intense or unbearable and is described as a thorn or needle pricking the eye or feeling as if the eye was set on fire. For some, the embarrassment of others seeing their purulent, watery eyes kept them shut in their homes and isolated from the wider community, which was described as ‘a living death’. Others desired to be socially active but were stigmatised and mocked by family, friends and neighbours. Trichiasis was reported to affect women’s mobility, ability to work and ability to earn an income, thus rendering them dependent on their families and decreasing their sense of security. It also prevented women from engaging in economic activity, reducing their abilities to fulfil religious and social obligations. The effects of the disease also extended to the entire family and caused social and financial burden, as well as extra work, for other family members. These findings are consistent with and add to understanding gained from other sources,4–7 but also contradict Dhaliwal et al.’s conclusion that trichiasis does not incur social impacts.5 These data indicate that many of the most important challenges of living with severe trachoma are social, rather than clinical, in nature; however, standard burden of disease measures such as Disability-Adjusted Life Years (DALY) only capture the disease sequelae of blindness and low vision.16,17 This has important advocacy and programmatic implications. Advocates use measures such as DALYs to leverage resources, and if the burden of disease is systematically being underestimated because these calculations leave out an important segment of those living with the disease in the absence of blindness and visual impairment, then trachoma may continue to be under-prioritised. Programmes often try to reach those with trichiasis through messaging about blindness; however, these women were primarily
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Authors’ contributions: SLP, AEP, AWM and PME conceived of the study; SLP and AEP designed the study protocol; SLP, KB, TO, MSK and ASH provided training and assisted with logistics; FI and IN carried out the interviews; SLP analysed the data; SLP drafted the manuscript; KW, AEP, AWM, DRH and PME critically revised the manuscript for intellectual content. All authors read and approved the final manuscript. DRH and PME are guarantors of the paper.
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While surgery was viewed positively, women were also aware of the risk of complications following surgery and recurrence of the disease. Among the operated women, all believed that any problems resulting from surgery were caused by not following instructions given for post-surgical care: ‘The problem, when someone tells you to do this or that thing, you need to respect what they tell you and you’ll see no problem. Everyone you see who was operated is told, “here’s what you need to do; you must do this.” If you didn’t respect it, if you make a mistake, it’s you who wanted it’ (operated woman, 70 years, Zinder Commune). While several unoperated women spoke generally about disease recurrence, only one postulated a cause, which differs substantially from the reasons given by operated women: ‘Those who had the surgery are thankful, but today and tomorrow, what I am telling you about is on its way [trichiasis recurrence]. Even if you are healthy . . . this lack [of money and food] can make you worry and the disease will come back, if you do not have what you need in this life. But having what you need is difficult’ (unoperated woman, 27 years, Tessaoua). In other words, poverty is at the root of this disease and if one is still in the same environment post surgery, disease is likely to recur.
concerned with pain relief, regaining their abilities to work and regaining their abilities to fully participate in their economic, social and religious activities. If programmes change the focus of their messages to address the greatest concerns of their target population, they might be able to encourage more cases to seek surgery. One innovative approach we used in conducting interviews was through pairing a woman with trichiasis and a confidante of her choosing. This method was employed in order to provide moral support to the woman being interviewed, as the study team anticipated that the women may be anxious and withdrawn in a one-on-one interview format.13 We also elected to use this format because we were interested in interviewing women, who are most affected by trichiasis, and in this Muslim setting a female confidante would provide protection to the honour of the female interviewee being interviewed by a male. While it is possible that this method may have inhibited some women from speaking openly, we found that in most cases the female confidantes assisted the interviewer by encouraging the trichiasis patient to speak, providing clarification on the meaning of questions to the interviewee, and also providing contextual information that enriched the story of the trichiasis cases themselves. We acknowledge that this study has some limitations. First, the scope of the study was to look at the effects of trichiasis on women in rural Niger; we therefore cannot generalise these results to men with the disease and would need to be cautious in extrapolating results to other settings, as clinical severity may differ among countries, and populations may have different perceptions of the disease and different priorities in their everyday lives. Second, we did not have access to baseline clinical characteristics of operated patients, so reports of improved vision or health post surgery could not be substantiated by clinical measures. Third, while we stratified on operated versus non-operated patients and attempted to find an array of trichiasis severity in women both young and old, it was outside the scope of this study to stratify on any characteristic other than operative status. However, between the two strata, there were few differences in the responses given to the questions posed, indicating that there are other factors that were not assessed in this study that contribute to the way in which trichiasis affects quality of life. In order to eliminate blinding trachoma in Niger by 2015 and worldwide by 2020, the elimination target of one trichiasis case per 1000 population must be reached, which demands increased resources and better ways of targeting those in need of intervention. The phrase used by these women to describe their condition, ‘a living death’, is a call to action. We hope these descriptions will be used to formulate messaging relevant to the population and reconsider burden of disease calculations, resulting in increased prioritisation of elimination efforts and resources at local and global levels.
International Health
Acknowledgements: The authors are very grateful to the 23 women who participated in these interviews and shared detailed and rich information about their lives living with trichiasis and hope that their stories will help trachoma programmes gain additional support. The authors would also like to thank the individuals who assisted with finding patients to screen and conducting clinical examinations. They also thank those responsible for transcribing the interviews. Funding: This work was supported by funding from the Kilimanjaro Center for Community Ophthalmology through the Conrad N. Hilton Foundation and the Lions Clubs International Foundation.
Ethical approval: This study was reviewed and approved by the Institutional Review Board (IRB) of Emory University (Atlanta, GA) [eIRB #59282]. In accordance with the principals of the Declaration of Helsinki, study participants were asked for their verbal consent, which was documented on the demographic and clinical questionnaire, and was approved by the Emory University IRB. Participants with unoperated or recurrent trichiasis or other ocular morbidities were referred to the nearest health facility where services were available. Active trachoma cases were given two tubes of topical tetracycline eye ointment and were instructed to apply twice daily for 6 weeks to the eyes in accordance with national guidelines.
References
5 Dhaliwal U, Nagpal G, Bhatia MS. Health-related quality of life in patients with trachomatous trichiasis or entropion. Ophthalmic Epidemiol 2006;13:59–66. 6 Wolle MA, Cassard SD, Gower EW et al. Impact of trichiasis surgery on physical functioning in Ethiopian patients: STAR trial. Am J Ophthalmol 2011;151:850–7. 7 Frick KD, Melia BM, Buhrmann RR, West SK. Trichiasis and disability in a trachoma-endemic area of Tanzania. Arch Ophthalmol 2001;119:1839–44. 8 WHO. WHOQOL: Measuring Quality of Life. Geneva: World Health Organization; 1997. 9 Carr AJ, Higginson IJ, Robinson PG, editors. Quality of Life. London, UK: BMJ Books; 2003. 10 ICTC. The End is INSight. Decatur, GA: International Coalition for Trachoma Control; 2011. 11 Cromwell EA, Courtright P, King JD et al. The excess burden of trachomatous trichiasis in women: a systematic review and meta-analysis. Trans R Soc Trop Med Hyg 2009;103:985–92. 12 Congdon N, West S, Vitale S et al. Exposure to children and risk of active trachoma in Tanzanian women. Am J Epidemiol 1993;137:366–72. 13 Patterson AE. Net Values: Meaning, Motivation and Measurement in the Distribution, Use and Monitoring of Bed Nets for Malaria Control in Segou, Mali. Atlanta, GA: Emory University; 2012. 14 Trost JE. Statistically nonrepresentative stratified sampling: a sampling technique for qualitative studies. Qualitative Sociology 1986;9:54–7.
1 Global WHO Alliance for the Elimination of Blinding Trachoma by 2020. Wkly Epidemiol Rec 2012;87:161–8.
15 Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res 2005;15:1277–88.
2 Pascolini D, Mariotti SP, Pokharel GP et al. 2002 global update of available data on visual impairment: a compilation of population-based prevalence studies. Ophthalmic Epidemiol 2004;11:67–115.
16 Murray CJ, Vos T, Lozano R et al. Disability-adjusted life years (DALYs) for 291 diseases and injuries in 21 regions, 1990–2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet 2012;380:2197–223.
3 Rajak SN, Habtamu E, Weiss HA et al. The clinical phenotype of trachomatous trichiasis in Ethiopia: not all trichiasis is due to entropion. Invest Ophthalmol Vis Sci 2011;52:7974–80.
17 Burton MJ, Mabey DC. The global burden of trachoma: a review. PLoS Negl Trop Dis 2009;3:e460.
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Competing interests: None declared.
4 Litt E, Baker MC, Molyneux D. Neglected tropical diseases and mental health: a perspective on comorbidity. Trends Parasitol 2012;28:195–201.
Received 22 April 2014; revised 25 May 2014; accepted 9 June 2014 Background: Prior to blindness, trachoma is thought to profoundly affect women’s abilities to lead normal lives, but supporting evidence is lacking. To better understand the effects of trichiasis, we asked women to define quality of life, how trichiasis affects this idea and their perceptions of eyelid surgery. Methods: Operated and unoperated women were purposively selected for in-depth interviews. These were audio-recorded and transcribed, and codes were identified and applied to the transcripts. Overarching themes, commonalities and differences were identified and matched to quotations. Results: Twenty-three women were interviewed. Quality of life was defined as health, security, family, social status and religious participation. Trichiasis caused severe pain and loss of health, leading to loss of security. This affected social, economic and religious activities and caused burden on their families. Surgery improved quality of life, even in cases of surgical failure or recurrent disease. Conclusions: Trichiasis disables most women, even those reporting fewer or less-severe symptoms. While women in rural Niger often live in extreme poverty, trichiasis exacerbates the situation, making women unable to work and undermining their social status. It adds to family burden, as women lose the ability to meaningfully contribute to the household and require additional family resources for their care. Keywords: Niger, Quality of life, Trichiasis, Women
Introduction Endemic to 53 countries, trachoma is the leading cause of infectious blindness worldwide. An estimated 325 million people are at risk for the disease, and 7.2 million have the blinding form of the disease, known as trachomatous trichiasis.1 Repeated ocular infections with the bacterium Chlamydia trachomatis lead to scarring of the conjunctiva of the inner surface of the eyelid, causing the eyelashes to turn towards the eye and abrade the cornea. The abrasion leads to corneal damage, vision loss and, eventually, irreversible blindness.2,3 Trichiasis is thought to have widespread consequences on individuals, families and communities, even prior to vision loss; however, the evidence supporting this statement is scant and
largely anecdotal. The little available evidence suggests that at the individual level, trichiasis causes negative physical and psychological effects such as pain, physical disability and stigmatisation, particularly for women.4–7 Despite these far-reaching effects, much of the published literature on trachoma has focused on its prevalence and risk factors, as well as programmatic evaluations of the SAFE strategy (S for surgery to correct entropion; A for mass antibiotic treatment for active infections; F for facial cleanliness and hygiene; and E for environmental improvements). Of the three published studies available examining any indicators of quality of life, two focused on physical functioning6,7 and the other additionally looked at mental health and impact on social and environmental indicators.5 All studies showed decreases in physical functioning, and
# The Author 2014. Published by Oxford University Press on behalf of Royal Society of Tropical Medicine and Hygiene. All rights reserved. For permissions, please e-mail: [email protected].
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ORIGINAL ARTICLE
Int Health 2014; 6: 291–297 doi:10.1093/inthealth/ihu054 Advance Access publication 14 August 2014
S. L. Palmer et al.
Methods Study population and setting This study was conducted in six villages in four districts of the Zinder and Maradi regions of eastern Niger, comprising four villages in two districts in Zinder (Zinder Commune and Magaria) and two villages in two districts in Maradi (Tessaoua and Aguie´). Zinder and Maradi are the most trachoma-endemic areas of Niger and harbour the highest numbers of trichiasis patients in the country. The majority of the population are ethnic Hausa, with Touareg, Kanouri and Peulh in the minority, and the large majority of the population is Muslim.
Village selection A list of all villages from which at least one trichiasis patient was operated in 2011 in the Zinder and Maradi regions was compiled and listed by district and region in Microsoft Excel (Microsoft Corp., Redmond, WA, USA) and then randomised using the RANDOM function. Villages were visited in the order on the list. If a village was found to be unsuitable due to inaccessibility or insecurity, the next village in the same district was visited. Villages were visited until data saturation had been achieved. As data were collected, an initial analysis was being conducted concurrently, enabling the researchers to determine the point of data saturation (defined as the point at which no new themes emerged from the interviews).
Participant recruitment and sample size Community health workers asked all women (aged ≥18 years) living with trichiasis or who had received eyelid surgery to report to a central location, generally the residence of the village chief. After obtaining informed consent, a trained trichiasis surgeon examined each potential participant to detect trichiasis and
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corneal opacity and, if they were present, to determine their severity. The trichiasis surgeon then completed a form with demographic and clinical characteristics. Women with an ocular co-morbidity, such as cataract, were excluded from further participation but were referred to care at the nearest hospital. Eligible women participated in a total of six unrecorded focus group discussions that focused on trachoma prevention and treatment. These did not segregate women based on operative status or other characteristics and were led by the female trichiasis surgeon and observed at a distance by the male interviewers to determine which women to invite to interview. Only women who actively participated in the focus groups and with select clinical and demographic characteristics (age, severity of trichiasis, operated versus unoperated) were asked to participate in in-depth interviews. A table listing the different combinations of these characteristics was used to track whether or not a woman with specific characteristics had been interviewed. The study team attempted to select at least one woman with each combination, and no more than two women with a given combination, to ensure variability in the sample. If the women accepted, they were asked to choose a female confidante (a close family member or friend knowledgeable about the other woman’s condition) aged ≥18 years to join them.13 Demographic information was collected on each confidante. Interviews were held in a private location of the participant’s choosing; women were interviewed by one of the two interviewers. It was estimated that 10–15 interviews each would be needed with operated and unoperated women with trichiasis in order to reach data saturation.14
Study instruments and interviewers Semi-structured interview guides were developed for in-depth interviews. Questions were categorised into three main themes: 1. definition of a quality life; 2. how trichiasis did or did not affect this ideal; and 3. perceived effects of surgery on quality of life. Interview guides were developed in French, discussed and modified by the study team and translated into Hausa, and then back-translated by an independent person to ensure quality translation. The interviews were recorded with digital audio recorders. Interviews were conducted by public health students at the Ecole Nationale de la Sante´ Publique (Zinder, Niger) who had previous experience in interviewing patients with neglected tropical diseases and who had been trained in qualitative research and interviewing.
Data analysis and verification Audio recordings were transcribed verbatim into French, de-identified and then uploaded into MAXQDA 2010 (VERBI Software, Berlin, Germany). From the interview guides, deductive codes were identified, defined and entered into the codebook. After reading and re-reading the data, inductive codes were identified, defined and entered into the codebook.15 Codes were applied to the transcripts. A PhD-level qualitative researcher not involved with the data collection applied the codes to a subset of the transcripts (six). Discrepancies in coding were discussed, code definitions were adjusted, and transcripts were re-coded. Analytic memos were written throughout the readings of the transcripts to identify overarching themes and commonalities as
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the third study also showed effects on trichiasis patients’ mental health and environment, but no effects on relationships/social life. However, these studies were conducted using quantitative quality-of-life instruments that were not designed specifically for those with trichiasis and may not have been validated in similar settings.8 In addition, they may not have captured the issues most important to this population.9 Niger is considered one of the priority countries for elimination of blindness due to trachoma owing to the large percentage of the population at risk for trachoma and a large backlog of persons in need of trichiasis surgery.10 The majority of this backlog are women since trichiasis presents more commonly in women than in men,11 a phenomenon generally attributed to women’s roles as caretakers of young children, the main reservoirs of the infection, and women’s subsequent increased exposure to infection.12 However, to our knowledge, no publications exist on the social implications of trichiasis on women in this setting. To this end, we aimed to determine how women in rural Niger themselves describe the effects of trichiasis on their quality of life. The study’s first objective was to determine how these women define ‘quality of life’ and whether trichiasis affects this ideal. The study also sought to assess the impact of surgery on the quality of life of those operated upon.
International Health
well as differences within and between interviews. Text segments relating to these themes were separated by strata (operated and non-operated women) and again examined for commonalities and differences within and between strata. The unit of analysis used for the in-depth interviews was the patient–friend pair; however, quotations from friends were distinguished from those made by patients, as their statements were generally contextual and not experiential.
Results A total of 45 operated and non-operated women were identified, of whom 3 were excluded due to an ocular co-morbidity. Thus, 42 women participated in focus groups, of whom 19 were subsequently excluded from participation in the in-depth interviews based on non-participation in the focus groups. A total of 23 women were selected for interview, 13 of whom had previously been operated for trichiasis and 10 who had never received surgery. Women representing a variety of ages, time since surgery and clinical presentations were interviewed (Table 1). The average duration for each interview was 45 min. We first describe women’s perceptions of what constitutes a quality life before illustrating how trichiasis affected this ideal and presenting these women’s perceptions of surgery.
Definition of a quality life A quality life was defined as having health, security, family, social status and fulfilment of religious obligations. All women stated that health was the most important indicator of a quality life, and nearly all of the other indicators of a quality life were linked to health and to each other. Security (food and financial) was viewed as both a pre-requisite for and consequence of health and could be obtained in two ways: providing for oneself through working or being provided for by family: ‘. . . the husband, too, needs to make money or find a way to make money. If not . . . there will be no ideal life. If he doesn’t have anything, neither do you’ (operated woman, 60 years, Magaria). However, the importance of having a husband extended beyond security; the personal relationship was also important: ‘A good life is when you get along well with your husband, if you are together for better or worse. If you play and laugh peacefully with your husband and community, that’s the good life for a person’ (operated woman, 50 years, Zinder Commune). Children were also identified as a source of security, but they were additionally viewed as a source of social standing, which constituted another element of a quality life: ‘If God gives you children, they will help you live, but if God didn’t give you children, you won’t be considered in the community . . . if you have children with money, even if you are handicapped, people will approach you and respect you’ (unoperated woman, 35 years, Zinder Commune). Besides having children, status in the community may be gained and manifested through active participation in economic activity: ‘A quality life is when . . . you are able to do your commerce in neighboring villages or you borrow money from someone to grow your business. When you do that, you have your dignity
Effects of trichiasis on quality of life Physical symptoms Trichiasis caused pain for all women: ‘I feel as if someone’s pricking my eyes with a thorn’ (unoperated woman, 27 years, Tessaoua); or ‘it was as if it [my eye] was set on fire’ (operated woman, 50 years, Tessaoua). Nearly all women also described experiencing watery or purulent eyes and problems with their vision, and some women also reported itching, headaches, swelling, fever, sores, photophobia, red eyes and insomnia. No women reported experiencing no symptoms; however, some women reported only a couple of minor symptoms, while others reported experiencing many or severe symptoms. The number of symptoms or severity of symptoms experienced did not always correspond to the level of clinical severity of the disease. Loss of security Participants described how the severe pain led to physical disability and subsequent loss of security. As previously defined, security was obtained through ability to work and through social relationships. Most women stated that due to the pain and photophobia from trichiasis, farming was difficult, if not impossible; to a lesser extent, they encountered difficulties in housework and taking care of their children and animals. This inability to work subsequently led to a loss of security in terms of food and money, and was compounded if social relationships were weak or absent: ‘If she farms, she’ll kill the millet. What difficulty is bigger than that?. . . In order to eat, she has to beg. She has no one who will bring her something to eat. This trichiasis, that’s the difficulty’ (friend of unoperated woman, 60 years, Aguie´). However, if social relationships were already weak or absent, trichiasis not only led to loss of security, it could also be the cause of decreased social status. One woman’s confidante stated: ‘. . . it’s in this search for medication that her entire fortune was spent. And now, she has nothing . . . and in this social life, they say if you have nothing, you are nothing’ (friend of operated women, 70 years, Zinder Commune). Stigmatisation The majority of patients had experienced social withdrawal and/ or social exclusion, a response to stigmatisation they anticipate from others: ‘. . . it [trichiasis] bothers me, especially the tears, and sometimes it prevents me from following my friends to
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Participation and study sample
and have money to spend in neighboring villages’ (operated woman, 38 years, Zinder Commune). Economic security and social status were also linked through fulfilment of social and religious obligations (one of the five pillars of Islam is zakat, the mandatory donation of a percentage of one’s wealth and income to the poor. Sadaka is a voluntary act of giving, and includes giving alms or gifts during weddings, baptisms or funerals). Muslims are required to give a certain portion of their earnings to those less fortunate and are also taught to give additional charity when inspired or able: ‘I never killed a sheep for Tabaski (a Muslim holiday), but I either killed or gave six live animals to family or neighbors who were needy’ (operated woman, 90 years, Tessaoua).
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294 Table 1. Demographic and clinical characteristics of operated and unoperated women (n¼23) Patient ID
District
Operated women 1 Zinder Commune 2 Zinder Commune 3 Zinder Commune 4 Zinder Commune 6 Magaria 8 Magaria 11 Zinder Commune 12 Zinder Commune 15 Magaria 19 Tessaoua 20 Tessaoua 21 Tessaoua 22 Aguie´ Unoperated women 5 Zinder Commune 7 Magaria 9 Magaria 10 Zinder Commune 13 Magaria 14 Magaria 16 Magaria 17 Tessaoua 18 Tessaoua 23 Aguie´
Region Age (years)
No. of times operated
Time since most recent surgery
Bilateral surgery
Severity of TT (worst eye)a
Currently epilating (either eye)
Presence of corneal opacity (either eye)
Evidence of post-operative TT (in either/both operated eye[s])
Zinder Zinder Zinder Zinder Zinder Zinder Zinder Zinder Zinder Maradi Maradi Maradi Maradi
70 60 50 80 45 60 38 30 70 90 20 50 40
1 1 2 2 1 1 2 1 2 1 2 1 1
6 months 6 months 3 months 3 years 5 months 5 months 2 years 6 years 6 months 25 years 3 months 3 months 10 years
No No Yes Yes No Yes Yes No Yes No Yes Yes No
None None Major Major None Major None None Mild Severe Severe None Major
No No No NR No Yes No No No No No No Yes
No No No NR No No No No No No No Yes No
No No Yes Yes No Yes No No Yes Yes Yes No Yes
Zinder Zinder Zinder Zinder Zinder Zinder Zinder Maradi Maradi Maradi
35 55 30 38 25 35 35 40 27 60
0 0 0 0 0 0 0 0 0 0
NA NA NA NA NA NA NA NA NA NA
NA NA NA NA NA NA NA NA NA NA
Major Mild Mild Major Mild Mild Mild Severe Severe Severe
Yes Yes No Yes No Yes Yes Yes Yes Yes
No Yes No No No No No Yes No No
NA NA NA NA NA NA NA NA NA NA
NA: not applicable; NR: data not recorded; TT: trachomatous trichiasis. Trichiasis is generally classified as minor (1–4 lashes or evidence of epilation) and major (≥5 lashes). However, for the purposes of this study, this was broken down as follows into four categories, as there may not be a meaningful difference in terms of quality of life in someone with 4 lashes and 5 lashes in the eye: none ¼ 0 lashes or evidence of epilation; mild ¼ 1–4 lashes; major ¼ 5–10 lashes; and severe ¼ .10 lashes.
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International Health
Family burden Trichiasis was also a burden on women’s families. In Niger, children often share in the household work. One woman, who had developed trichiasis early in life, was not able to help her mother. Her mother recalls: ‘I didn’t even make her work. I saw children go to the well, but me, I didn’t send her. When I saw her eyes, I told myself, “I won’t make her do any work”’ (friend of operated woman, 20 years, Tessaoua). Men in households with trichiasis patients were affected in two main ways. First, since women were often unable to perform household and farm work to support the well-being of their families, at times it was men who took over these duties. One woman said that it was her husband who did the cooking and laundry in the household. Second, men were affected financially, as they often spent large sums of money caring for wives and mothers with the disease.
Illness, including trichiasis, was viewed by those who had received the operation as a disruption to a quality life. Epilation was seen as part of the state of illness and was therefore not compatible with a quality life: ‘. . . whenever it [trichiasis] stings you, you feel pain all over your head. It affects your spirit, so one can’t speak of a life of quality with this pain you feel. Sometimes when it bothers you, you need to epilate in order to feel relief. When I had trichiasis, I always had my tool with me to epilate with. Before the trichiasis developed, at this time, you felt better and you could say that you had an ideal life’ (operated woman, 80 years, Zinder Commune).
Perceptions of trichiasis surgery and its impact on quality of life All but one operated patient stated that trichiasis surgery had improved their quality of life, and the one patient whose life had not been improved stated that she would still consider undergoing the surgery again to rid herself of the pain. For nearly all of the patients who had undergone surgery, the improvement in quality of life was expressed as an amelioration or complete disappearance of physical symptoms. Trichiasis surgery was viewed as a life-changing experience: not only was health regained after surgery, but life was as well. One woman stated, ‘All who received the surgery are healed. There are no more tears in the eyes or eyelashes that prick. They have recovered their best life’ (unoperated woman, 38 years, Zinder Commune).
Improved health, security and social integration Search for a cure Patients described living with trichiasis as a constant, often futile, search for a cure, which affected both themselves and their families. The mother of one operated woman, who had developed trichiasis at a young age, stated, ‘Everywhere where I heard there was someone with medication, I would go. Like that, I did everything. But nothing [helped]’ (friend of operated woman, 20 years, Tessaoua). It should be noted that this search for a cure was always in relation to pain relief and reduction of other physical symptoms; in only one instance did a woman tie this search for a cure to avoiding blindness. Although women commonly practiced non-surgical management strategies such as epilation, women described the relief they obtained from them as cyclical: they would experience the pain and other symptoms of trichiasis, epilate, and then the cycle would generally be repeated every couple of days: ‘Today I am epilated, tomorrow I am epilated’ (operated woman, 38 years, Zinder Commune). In general, operated patients viewed epilation as a way to provide immediate pain relief, while surgery was a long-term cure: ‘And then they were searching for an instrument to epilate me, and they heard there was this operation, and I said “I’m going to go do it”. . . This surgery is better . . . yes it’s superior to the other [epilation], but since they operated me, there have been no others [trichiatic lashes]’ (operated woman, 70 years, Zinder Commune).
Prior to surgery, nearly all operated patients expected to improve their health through trichiasis surgery, while a few also explicitly stated that they had hoped to regain their abilities to work, travel and re-integrate socially. One operated woman stated: ‘My expectations [of surgery] were to recover my health: see what I want with my eyes; look after my husband; be able to do my work, cooking, farming; travel and go where I want and be able to integrate into the community without difficulties . . . My expectations were satisfied and my vision has improved (operated woman, 30 years, Zinder Commune). While nearly all operated patients stated that their expectations were fulfilled through surgery, several women had to have more than one surgery before their trichiasis was corrected and their symptoms abated. All but one patient with recurrent disease (including major and severe trichiasis) stated that the surgery had been successful; the recurrence may have been less severe than their state prior to surgery. One woman with severe post-operative trichiasis (.10 lashes touching the eye) stated, ‘Since I had the operation, I never felt anything bad in my eyes’ (operated woman, 20 years, Tessaoua). Only one patient said that she had experienced no improvement from the surgery and was, in fact, in a worse state: ‘If I had known what was to come, I wouldn’t have gone. I would have been happy with my initial situation which didn’t stop me from working’ (operated woman, 50 years, Tessaoua). However, despite her poor outcome, this patient recognised that others had had successful outcomes.
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participate in a village activity . . . if you don’t have eyes, it’s like a living death’ (operated woman, 35 years, Magaria). In other cases, the exclusion was imposed by others: ‘It’s your group of friends who talk about you and put you down. [They say] “Look at this dirty woman. She spills her tears on everything she touches and cooks. Her hands and clothing are dirty”’ (operated woman, 60 years, Magaria). While only a few women spoke about their relationships with men, all who spoke about them stated that their own husbands had treated them respectfully, although they had heard that other men abandoned their wives with trichiasis or refused to eat dishes they had prepared. However, one young woman stated that a man had come to ask her father for her hand in marriage, but after hearing about her condition he never returned.
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Complications and disease recurrence
Discussion This study demonstrates the profound effects of trichiasis on the quality of life of these women, even for some presenting with clinically mild trichiasis. For many, the pain is intense or unbearable and is described as a thorn or needle pricking the eye or feeling as if the eye was set on fire. For some, the embarrassment of others seeing their purulent, watery eyes kept them shut in their homes and isolated from the wider community, which was described as ‘a living death’. Others desired to be socially active but were stigmatised and mocked by family, friends and neighbours. Trichiasis was reported to affect women’s mobility, ability to work and ability to earn an income, thus rendering them dependent on their families and decreasing their sense of security. It also prevented women from engaging in economic activity, reducing their abilities to fulfil religious and social obligations. The effects of the disease also extended to the entire family and caused social and financial burden, as well as extra work, for other family members. These findings are consistent with and add to understanding gained from other sources,4–7 but also contradict Dhaliwal et al.’s conclusion that trichiasis does not incur social impacts.5 These data indicate that many of the most important challenges of living with severe trachoma are social, rather than clinical, in nature; however, standard burden of disease measures such as Disability-Adjusted Life Years (DALY) only capture the disease sequelae of blindness and low vision.16,17 This has important advocacy and programmatic implications. Advocates use measures such as DALYs to leverage resources, and if the burden of disease is systematically being underestimated because these calculations leave out an important segment of those living with the disease in the absence of blindness and visual impairment, then trachoma may continue to be under-prioritised. Programmes often try to reach those with trichiasis through messaging about blindness; however, these women were primarily
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Authors’ contributions: SLP, AEP, AWM and PME conceived of the study; SLP and AEP designed the study protocol; SLP, KB, TO, MSK and ASH provided training and assisted with logistics; FI and IN carried out the interviews; SLP analysed the data; SLP drafted the manuscript; KW, AEP, AWM, DRH and PME critically revised the manuscript for intellectual content. All authors read and approved the final manuscript. DRH and PME are guarantors of the paper.
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While surgery was viewed positively, women were also aware of the risk of complications following surgery and recurrence of the disease. Among the operated women, all believed that any problems resulting from surgery were caused by not following instructions given for post-surgical care: ‘The problem, when someone tells you to do this or that thing, you need to respect what they tell you and you’ll see no problem. Everyone you see who was operated is told, “here’s what you need to do; you must do this.” If you didn’t respect it, if you make a mistake, it’s you who wanted it’ (operated woman, 70 years, Zinder Commune). While several unoperated women spoke generally about disease recurrence, only one postulated a cause, which differs substantially from the reasons given by operated women: ‘Those who had the surgery are thankful, but today and tomorrow, what I am telling you about is on its way [trichiasis recurrence]. Even if you are healthy . . . this lack [of money and food] can make you worry and the disease will come back, if you do not have what you need in this life. But having what you need is difficult’ (unoperated woman, 27 years, Tessaoua). In other words, poverty is at the root of this disease and if one is still in the same environment post surgery, disease is likely to recur.
concerned with pain relief, regaining their abilities to work and regaining their abilities to fully participate in their economic, social and religious activities. If programmes change the focus of their messages to address the greatest concerns of their target population, they might be able to encourage more cases to seek surgery. One innovative approach we used in conducting interviews was through pairing a woman with trichiasis and a confidante of her choosing. This method was employed in order to provide moral support to the woman being interviewed, as the study team anticipated that the women may be anxious and withdrawn in a one-on-one interview format.13 We also elected to use this format because we were interested in interviewing women, who are most affected by trichiasis, and in this Muslim setting a female confidante would provide protection to the honour of the female interviewee being interviewed by a male. While it is possible that this method may have inhibited some women from speaking openly, we found that in most cases the female confidantes assisted the interviewer by encouraging the trichiasis patient to speak, providing clarification on the meaning of questions to the interviewee, and also providing contextual information that enriched the story of the trichiasis cases themselves. We acknowledge that this study has some limitations. First, the scope of the study was to look at the effects of trichiasis on women in rural Niger; we therefore cannot generalise these results to men with the disease and would need to be cautious in extrapolating results to other settings, as clinical severity may differ among countries, and populations may have different perceptions of the disease and different priorities in their everyday lives. Second, we did not have access to baseline clinical characteristics of operated patients, so reports of improved vision or health post surgery could not be substantiated by clinical measures. Third, while we stratified on operated versus non-operated patients and attempted to find an array of trichiasis severity in women both young and old, it was outside the scope of this study to stratify on any characteristic other than operative status. However, between the two strata, there were few differences in the responses given to the questions posed, indicating that there are other factors that were not assessed in this study that contribute to the way in which trichiasis affects quality of life. In order to eliminate blinding trachoma in Niger by 2015 and worldwide by 2020, the elimination target of one trichiasis case per 1000 population must be reached, which demands increased resources and better ways of targeting those in need of intervention. The phrase used by these women to describe their condition, ‘a living death’, is a call to action. We hope these descriptions will be used to formulate messaging relevant to the population and reconsider burden of disease calculations, resulting in increased prioritisation of elimination efforts and resources at local and global levels.
International Health
Acknowledgements: The authors are very grateful to the 23 women who participated in these interviews and shared detailed and rich information about their lives living with trichiasis and hope that their stories will help trachoma programmes gain additional support. The authors would also like to thank the individuals who assisted with finding patients to screen and conducting clinical examinations. They also thank those responsible for transcribing the interviews. Funding: This work was supported by funding from the Kilimanjaro Center for Community Ophthalmology through the Conrad N. Hilton Foundation and the Lions Clubs International Foundation.
Ethical approval: This study was reviewed and approved by the Institutional Review Board (IRB) of Emory University (Atlanta, GA) [eIRB #59282]. In accordance with the principals of the Declaration of Helsinki, study participants were asked for their verbal consent, which was documented on the demographic and clinical questionnaire, and was approved by the Emory University IRB. Participants with unoperated or recurrent trichiasis or other ocular morbidities were referred to the nearest health facility where services were available. Active trachoma cases were given two tubes of topical tetracycline eye ointment and were instructed to apply twice daily for 6 weeks to the eyes in accordance with national guidelines.
References
5 Dhaliwal U, Nagpal G, Bhatia MS. Health-related quality of life in patients with trachomatous trichiasis or entropion. Ophthalmic Epidemiol 2006;13:59–66. 6 Wolle MA, Cassard SD, Gower EW et al. Impact of trichiasis surgery on physical functioning in Ethiopian patients: STAR trial. Am J Ophthalmol 2011;151:850–7. 7 Frick KD, Melia BM, Buhrmann RR, West SK. Trichiasis and disability in a trachoma-endemic area of Tanzania. Arch Ophthalmol 2001;119:1839–44. 8 WHO. WHOQOL: Measuring Quality of Life. Geneva: World Health Organization; 1997. 9 Carr AJ, Higginson IJ, Robinson PG, editors. Quality of Life. London, UK: BMJ Books; 2003. 10 ICTC. The End is INSight. Decatur, GA: International Coalition for Trachoma Control; 2011. 11 Cromwell EA, Courtright P, King JD et al. The excess burden of trachomatous trichiasis in women: a systematic review and meta-analysis. Trans R Soc Trop Med Hyg 2009;103:985–92. 12 Congdon N, West S, Vitale S et al. Exposure to children and risk of active trachoma in Tanzanian women. Am J Epidemiol 1993;137:366–72. 13 Patterson AE. Net Values: Meaning, Motivation and Measurement in the Distribution, Use and Monitoring of Bed Nets for Malaria Control in Segou, Mali. Atlanta, GA: Emory University; 2012. 14 Trost JE. Statistically nonrepresentative stratified sampling: a sampling technique for qualitative studies. Qualitative Sociology 1986;9:54–7.
1 Global WHO Alliance for the Elimination of Blinding Trachoma by 2020. Wkly Epidemiol Rec 2012;87:161–8.
15 Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res 2005;15:1277–88.
2 Pascolini D, Mariotti SP, Pokharel GP et al. 2002 global update of available data on visual impairment: a compilation of population-based prevalence studies. Ophthalmic Epidemiol 2004;11:67–115.
16 Murray CJ, Vos T, Lozano R et al. Disability-adjusted life years (DALYs) for 291 diseases and injuries in 21 regions, 1990–2010: a systematic analysis for the Global Burden of Disease Study 2010. Lancet 2012;380:2197–223.
3 Rajak SN, Habtamu E, Weiss HA et al. The clinical phenotype of trachomatous trichiasis in Ethiopia: not all trichiasis is due to entropion. Invest Ophthalmol Vis Sci 2011;52:7974–80.
17 Burton MJ, Mabey DC. The global burden of trachoma: a review. PLoS Negl Trop Dis 2009;3:e460.
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Competing interests: None declared.
4 Litt E, Baker MC, Molyneux D. Neglected tropical diseases and mental health: a perspective on comorbidity. Trends Parasitol 2012;28:195–201.
